The Office for National Statistics (2022) estimated that between 175 000 and 205 000 people in the UK live with a stoma (Colostomy UK, 2021; NHS Digital, 2021), and around 21 000 people have stoma surgery each year (Aibibula et al, 2022). Burch (2021) states that 1 in 335 people in the UK are living with a stoma. Stoma surgery is performed to treat a range of conditions including bowel and bladder cancer and inflammatory bowel disease. While the formation of a stoma is a life-saving procedure for many, it can also pose considerable post-operative challenges for new ostomates, both mentally and physically (Bladder and Bowel UK, 2020). Across Northern Ireland and the Republic of Ireland, 53% of surveyed ostomates described their life during the 12 months post-operatively using mainly negative terms. However, their outlook generally became more positive as time went on (Haughey and McGroggan, 2017). Adjusting to life with a stoma after surgery can be a daunting experience with new ostomates facing many challenges. These challenges include:
Stoma care and management: learning how to clean, maintain and change ostomy appliances can be initially overwhelming
Complications: issues like leakage, skin irritation or infections around the stoma can occur, making the adjustment period more challenging
Dietary changes: adapting to dietary restrictions or concerns about how certain foods might impact output can be difficult
Activity limitations: fear of engaging in physical activities or sports, especially initially, as a result of concerns about damaging the stoma
Body image concerns: coping with changes in body appearance can impact self-esteem and confidence
Grief or loss: many feel a sense of loss over their pre-surgery body and lifestyle, which can lead to emotional distress
Mental health: anxiety, depression or frustration about adapting to life with an ostomy is common
Social stigma: concerns about odour, noise from the stoma or being judged can lead to isolation or embarrassment
Dating and relationships: navigating intimate relationships can be intimidating
Access to supplies: ensuring access to the right ostomy products and understanding how to use them effectively can be a hurdle
Financial strain: the cost of ostomy supplies and related healthcare can be significant
Lack of knowledge: new ostomates often lack the initial education or resources to handle their ostomy confidently
Travel challenges: travelling with an ostomy requires preparation, such as carrying extra supplies and dealing with security checks
Lack of support systems: limited emotional or practical support from family, friends or healthcare providers can exacerbate feelings of loneliness
Limited access to counselling or support groups: not all ostomates are aware of, or have access to, peer support groups or counselling services, which can help ease the transition.
These fears and anxieties may be exacerbated if the person has undergone emergency surgery for formation of a stoma and has limited opportunity to plan or mentally prepare for life with a stoma. Scheede-Bergdahl et al (2019) believe that there has been a growing realisation that successful surgery is also dependent on how well the patient recovers, not just physically, but also psychologically.
Concerns include stoma leakage, peristomal skin complications including redness, irritation, pain and stoma appliance adhesion. There are also concerns around odour, noise, travel, exercise and intimacy, which may lead to a person isolating themselves from social situations (Claessens et al, 2015).
In a two-part interview with William McMullan, a 22-year-old masters graduate from Northern Ireland, we spoke about his journey from a masters graduate with definite life and career plans and goals, through emergency surgery, to adapting to life with a stoma, discussing some of the issues outlined above.
The initial interview (part one) discusses physical barriers and the emotional burden of coming to terms with living with a stoma. Specific statements and pieces of advice have been highlighted in bold. The follow up discussion (part two) will discuss the social, practical and support barriers that many ostomates face.
What was life like before your illness and surgery?
Before the diagnosis, my life was, while it may sound cliché, almost perfect, I was active in my shooting team and my University Air Squadron. I was very active, always in the gym, running and cycling a lot, having recently completed a marathon in Budapest, and I had a strong social circle around me, both in my classes and my clubs and societies, as well as the most amazing girlfriend, who has been with me throughout this whole ordeal for which I cannot thank her enough. I had a job lined up in the RAF as a back seater and was looking forward to travelling the world and living the Top Gun life after graduation. Throughout university, I had never shied away from any challenge, running marathons, climbing in Italy, endurance marches in the Netherlands and travelling as much as possible.
Can you tell us about your feelings on diagnosis and being told about plans for your surgery/stoma?
I can remember the day of the diagnosis as clear as ever, while travelling from St Andrews to Chesterfield for the BUCS indoor shooting competition, I developed some abdominal pain which worsened throughout the day and resulted in me being taken to Chesterfield Royal Hospital A&E.
It was here that the theories on what was causing this abdominal pain developed from constipation, to a kidney stone, to finally, after a CT scan, a caecal volvulus on the right hand side of my bowel, with an incidental discovery of a kidney tumour on the same side, which only compounded the emotional stress of the whole ordeal. I was told that the treatment for a volvulus was a surgery where the affected area of bowel would be removed, and the remaining bowel would be formed into a stoma. After receiving this news I was in a terrible emotional state, I was worried that all the things that I enjoyed in life would be taken away from me.
Would I be able to lie on my front to shoot, would I be able to exercise or travel or live independently? I was immediately worried that the career that I had planned for and worked towards for several years may not come to pass. This was all not considering the problems in front of me, being in an intensive care unit bed, I hadn’t thought about how long it would take to recover and to adjust to a new life with a new complication. My only saving grace was that the urgency of the surgery made it so I did not have a chance to worry before the operation took place.
In terms of stoma care and management, learning how to clean, maintain and change ostomy appliances can be initially overwhelming.
These are without a doubt challenges to overcome when it comes to managing and cleaning and living with a stoma. For example, in some of the very early days of having a stoma, during my first long journey with one, the bag burst. This was because I had neglected to empty it throughout the journey. In the early days of life with a stoma, the changing of the bags and cleaning yourself afterwards can be fiddly, keeping the adhesives dry and making sure to keep the area free from hair and the rest, and there’s a learning curve to get over. However, thanks to the support of the stoma nurses both in Chesterfield and in Northern Ireland, I always had the support I needed to get over that learning curve.
Issues like leakage, skin irritation, or infections around the stoma can occur, making the adjustment period more challenging.
These were all challenges that did occur. For example, particularly for men, what can be very tough to get used to is the adhesive that is used for bags, which does not work well for those of us with hairy stomachs. The best piece of advice I can give to help with this problem is to get a good pair of clippers and simply keep the area clean shaved. When it comes to countering the problem of leakage, I found that the best way to prevent it was to find the right kind of bag and seal for you. Some types work for some and different types work for others. It is just a trial and error process to find out what works. Furthermore, the best way to ensure that the adhesive of the bag gets a firm hold onto the skin is to make sure that the area and the adhesive are as dry as possible.
Adapting to dietary restrictions or concerns about how certain foods might impact output can be difficult.
This is an area where I can perhaps offer a glimpse of hope for people who have just got a stoma. The guidance that I received initially about what foods to avoid and what foods to aim for was worrying—it seemed to me that what was recommended was all of the things that were unhealthy. It seemed to be that you were only allowed to eat carbs and salt. However, having had a stoma for 8 months, I can say that they were seldom any foods that caused me any issues with the stoma, which was a massive relief to say the least.
You can develop fear of engaging in physical activities or sports, out of fear of damaging the stoma.
About 6 weeks after the surgery, I was desperate to get back to being active. I was of course worried that being active would be difficult with the bag. I was worried that the stoma might get damaged, that the bag would come off, or that having that extra mass might affect how comfortable I would be being active. I am glad to say that there several pieces of equipment that can help with this: a support band that had a protective cup on it was invaluable in allowing me to resume shooting, as it allowed me to more comfortably lie in a prone position with the bag. The support band also helped to hold the bag in place, which meant that both running and cycling were both much easier and much more comfortable. Stoma bags may seem like they would be a big obstacle to being active, and they do in some ways reduce your mobility, particularly when it comes to bending over and movements such as that, but there are ways around this. With tools such as support bands, and adjusting how you stay active, all challenges can be overcome.
Coping with changes in body appearance can impact self-esteem and confidence.
I am happy to say that because I have always been a very outdoorsy and active person, body image has never been something that I have struggled with very much in life. However, this only compounds the power of a stoma to affect the body image integrity of a person. In the immediate months following the surgery, I did worry about how it would look: would it be visible under my clothes? Could it leak and the smell be noticeable to others? This is an incredibly hard thing to get over and I believe the best thing to hear if you are worried about this, is that you will not be the only person who feels this way.
Many feel a sense of loss over their pre-surgery body and lifestyle, which can lead to emotional distress.
This is an incredibly astute metaphor to describe how one can feel after the surgery. I certainly lamented the fact that changing and maintaining the bags was an extra level of self-care that had been imposed on my life and never ceased to be a bit of a hassle. This was compounded by the irritation and comfortability that the bag can sometimes bring. The loss of a particular lifestyle as well can be particularly distressing, but I would like to say to anyone that is worried about this, your lifestyle does not have to change.
You can be active, you can socialise, you can travel and do all the things that you would do before you got the stoma. I never let it stop me going to dinners with my reserve Squadron or going out with friends. I never let it stop me being active, travelling, driving or limiting me in any way. It doesn’t have to for anyone.
Anxiety, depression, or frustration about adapting to life with an ostomy can be common.
The main frustration that I found was not with any aspect of the adaptation to a new life with a stoma; it was much more aimed at the fact that I had to adapt in the first place. I felt that it was an extra burden that had been unjustly placed onto me, compounded by those early days of inexperience with dealing with the bag, where it was all the more fiddly and annoying. I’m sure that this will be something that many people will feel after getting a stoma. I hope it is reassuring to hear that it does get easier after practice, and it becomes just as routine as brushing your teeth or having a shower. I am also very aware that for someone in the early days of having a stoma will not be particularly comforting, but I promise you it will get easier.
Conclusions
William has demonstrated how he has faced barriers while adapting to life with a stoma after emergency surgery. He has encountered many challenges along the way; however, with a very practical approach and support from his partner, family, colleagues and medical professionals, he has overcome these and adapted to life with a stoma to live a very full and active life.
William has travelled quite extensively, participated in sport and exercise and had an active social life since formation of his stoma. Life with a stoma will undoubtedly present individuals with variable challenges and barriers, though with a good support network and input from medical professionals,
William has shown how these barriers may be overcome to minimise emotional distress and maximise quality of life. Part two of the interview will address social, practical, and support barriers and challenges.